Planning for the future: a comparative study of advance directives in Scotland, England and the Netherlands

Abstract

This thesis comprises three comparative case studies of advance directives under existing legislative arrangements in the Netherlands, Scotland and England. In the Netherlands, an Act of Parliament gives statutory backing to advance directives. In Scotland, the principles of the Adults with Incapacity (Scotland) Act 2000 instructs persons who take any intervention under the Act to have regard to a person's previously expressed wishes. Whereas, in England, no current statute governs medical decision-making and practitioners look to the common law for legal guidance. The research seeks to elucidate attitudes to advance directives within the medical and legal professions in each country and to determine how much impact (if any) they have on treatment decision-making for incapacitated persons. It focuses on the process of medical decision-making for patients with and without capacity, and the ways in which medical and legal professionals assess the adequacy of existing arrangements. The primary goals of the thesis are to understand whether, and if so how, advance directives contribute to patient autonomy, the extent to which legal regulation controls medical decision-making, and the effects of advance directives on the balance of power between doctors and patients. Two models of decision-making ('substituted judgement' and 'best interests') and how doctors use them to make decisions for persons without capacity are considered.Arguments in favour of advance directives are usually based on the principle of respect for individual autonomy, and the belief that anticipatory decision-making provides a mechanism for preserving patients' autonomy when they are no longer capable of expressing their own preferences. The idea of using anticipatory decision¬ making as a method of extending individual autonomy into the future has been welcomed by the majority of medical and legal professionals. However, a significant minority express serious doubts about the efficacy of advance directives in preserving the autonomy of the patient, especially when this conflicts with the doctor's professional autonomy and the exercise of the doctor's professional power. They may erode the ultimate decision-making power ofthe doctor and exacerbate the conflict between individual and professional autonomy. Professional autonomy stems not only from the doctors' knowledge and expertise but also from their position as gatekeepers for goods and services; it is protected by the medical profession's right to self-regulation which enables doctors to define both the needs of patients and how these needs should be met.The study uses a socio-legal approach based on fieldwork in the Netherlands, Scotland and England to study this important issue in medical law. Qualitative interviews were conducted with 10 lawyers and 10 doctors in each country and interview data were analysed using NVIVO. The data were used to study advance directives in relation to medical decision-making, individual and professional autonomy and the balance of power between doctor and patient. The main findings are that, in all three countries, advance directives can be significant in protecting patient autonomy and can be used to strengthen the patient's substituted judgement. Statutory regulation of advance directives (in the Netherlands) does not appear to protect patients' autonomy any more than the common law (in Scotland and England); in fact the common law seems to be marginally better at ensuring incapacitated patients' rights to their own choices. Differences in legal regulation of advance directives in each country have made little difference to the inequality of power between doctor and patient but legislation is being used to initiate a reduction of that inequality in the Netherlands, where statutory regulation can strengthen the patient's substituted judgement and emphasise or enhance decisions made by a patient's representative. Power in both England and in Scotland is still heavily weighted on the side of the physician but, in England, advance directives can help relationships between doctor and patient where the act of writing an advance directive encourages patients to open a dialogue with their doctors and promote discussion of future treatment preferences. In Scotland, however, there has been little change in the doctor-patient relationship - it is still believed that 'doctor knows best' and prevailing opinion suggests that advance directives are not be legally binding on doctors.The thesis makes a significant contribution to understanding the operation of advance directives and their impact on medical decision-making. By investigating medical decision making in three different jurisdictions, it shows that a patient's personal autonomy is tolerated rather than celebrated by those in possession of professional autonomy and power, regardless of the nature of the legal rules involved.